The Path to PNH Diagnosis: An Exploratory Study of Disease History, Treatment Seeking, and Quality of Life | Aplastic Anemia and MDS International Foundation

The Path to PNH Diagnosis: An Exploratory Study of Disease History, Treatment Seeking, and Quality of Life

The Aplastic Anemia and MDS International Foundation (AA&MDSIF) is conducting in-depth interviews with PNH patients. As a PNH patient, you are being asked to participate in a recorded telephone interview to help us better understand the path to PNH diagnosis and how the treatments you receive affect your life and the lives of those around you. We also want to know about what services and information you most value. Your answers will be used to improve our services and patient programs as well as provide information to support health professional continuing education and resources. If you are interested in sharing your PNH experience, please email research@aamds.org or call (301) 279-7202 x 123. 

These interviews will be recorded and you will be reminded of that when we call to schedule the interview. The recorded interviews will be sent to be transcribed without your name or other identifying information attached. The transcripts will be returned to the study team, who will write the study report based on the information. Portions of the transcripts may be shared with the sponsor of the study, but no information that identifies you will be included. There are no known risks associated with being in this research study.  At a later date, you may receive another email inviting your voluntary participation in the second part of the study, which is an online survey for all PNH patients.

If you agree to participate, you will be compensated for your time. Each participant in the recorded telephone interview will receive a $25 Amazon gift card. We anticipate interviewing a maximum of fifteen participants, and will close the study after fifteen people have been interviewed. The money for gift cards is provided through a grant by Alexion and does not come from any existing AA&MDSIF funds.

What else do you need to know before taking participating in the interview?

  • The interview is being sponsored by the AA&MDSIF.
  • It is open to all patients with a diagnosis PNH. The interview should take you about 30 minutes, and will be scheduled at your convenience.
  • Our goal is to have about 10-15 patients speak with the researcher.
  • The study is 100% voluntary.
  • There are no unforeseen risks or benefits to you.
  • You will be asked to consent, but the recording will not contain any identifiable information (e.g. your full name, address, doctor’s name)
  • You may decline to share anything you do not feel comfortable talking about. 

Contact Ellen Salkeld, PhD at (301) 279-7202 x123 for questions about the research or if you think you have been harmed as a result of joining this research. Contact the Western Institutional Review Board (WIRB) if you have questions about your rights as a research subject: 1-800-562-4789.  WIRB is a group of people who perform independent review of research.